Hope and help for triple-negative (TNBC) and other forms of hormone-negative breast cancer.

Monday, August 3, 2015

What Caused My Cancer?

When I speak to groups about breast cancer, I always make
one important point: “You didn't cause your cancer.” I say it because I know
women think it. What did I do? They
beat themselves up with the what ifs and whys at a time when they need to be
focused on building their physical, mental, and spiritual strength.

It’s inevitable that we go there, though, and it might even
be somewhat worthwhile, if we can pull off an honest analysis without whipping
up the blame. I did beat triple-negative breast cancer the first time nine
years ago and plan to beat it again. But, to be truthful, the healthy lifestyle
I adopted after my first diagnosis, which I credited with my ongoing good
health, became a bit difficult to sustain. Was that a factor?

As you’ll see, just about everything could have caused this.
If only I had been perfect.

1. Too much alcohol. The World Health Organization considers
alcohol a carcinogen and says there’s no safe level of alcohol use, especially
for those at risk of breast cancer. The more you drink, the greater your risk.
Immediately after my first diagnosis, I had wine only on special occasions; at
dinner I had organic black cherry juice in a wine glass, which was pretty
delicious. Over the years I gradually started drinking more, adding martinis
and an occasional shot of whiskey. At home I kept myself to one drink, but at
dinners with friends, I had two or three glasses of wine. And this past winter
I had some back problems and wine was the only sure-fire painkiller, so I would
have only a glass, but it was a big one.

But here’s the thing about research on alcohol: It is done
largely using surveys, so participants self-report their alcohol use. And human
nature is such that we typically underestimate our bad behavior. So people who
usually have three glasses of wine a day might report that they have one, and
when they get cancer, that one measly glass is seen as dangerous, whereas the actual amount was three times that much.

2. Too few vegetables. And too many French fries and tacos. My original post-cancer diet nine years ago focused on at least five servings of vegetables and fruits, which has been shown to
counter breast cancer, especially triple-negative. Eventually, I got a bit lazy
and replaced some of the healthy stuff with unhealthy foods.

And I especially didn't eat enough dark, leafy greens, which are high
in folate that can reduce breast cancer risk. Also, my stomach had been given
me problems because of too many pills, so I even stopped taking the 600 micrograms supplement of folic acid that has been shown to reduce the effects of alcohol.

3. Change in exercise routine. This one is seriously weird
and counter to all the research, but I think I finally figured it out. A year
before my first diagnosis, I had begun to work out with a personal trainer and
ultimately lost 50 pounds by jogging, increasing the length and speed of my
walks, and eating fewer calories.In the
nine years since then, I had gained back 15 of those pounds, so this winter, I
got a Fitbit and started increasing my exercise and reducing my calories. By
the time I was diagnosed the second time, I had lost 10 of those pounds.

Why, with both of my diagnoses, did weight loss and
increased exercise end up in cancer? I think it was because I had gained the
weight in the first place and the cancer was already starting when I began to
lose the pounds. So the weight loss probably helped me fight the cancer and
kept it from returning, but it came too late to stop it from growing in the
first place. Weight gain is directly associated with all forms of breast cancer, including TNBC.

My takeaway: Keep the exercise up and the pounds off. Don't
get to the point at which increased exercise and reduced calories constitute a
change. Make that the standard.

4. Radiation. The irony of breast cancer treatment is that
it tends to put you at risk of second cancers. The National Cancer Institute
warns that its Risk Assessment Tool for breast cancer is not appropriate for women who have had
previous radiation treatment to the chest because this increases their chances
of cancer. Not only did I have the standard 35-day radiation therapy, but I
have had multiple chest x-rays since then for COPD. So my chest has had a lot
of radiation, and radiation can cure as well as cause cancer.

5. Genetics. I have no family history of breast or ovarian
cancer, although my Eastern European heritage puts me at increased risk of the
BRCA1 or 2 genetic mutation. I really don't think this is genetic, though. I was 60 at the
first diagnosis and 69 at the second, plus I have plenty of lifestyle issues
that point to an increased risk.

Still, I think I live a lot healthier than most people I
know—people who, by the way, don't get breast cancer twice—so there has to be
some inherent tendency toward cancer in my DNA. Cancer, researchers say, is as
unique as our DNA, so I have to factor in my own inherent whatever here. Plus,
our DNA can be affected by factors in our broad environment—air, water, food,
diet, stress—as well as by inherited traits. I was the fifth child, born when
my mother was 40, so I often kid my siblings that I got the bad eggs.

Healthy lifestyle can combat DNA damage, which is good news,
and reason to return to taking good care of my body.

So, no, I didn't cause this. Maybe I didn't do all I could to
prevent it. I got sloppy and cocky and apparently I don't have the
leeway I thought I did. I don't believe in guilt trips, but making this list
has reminded me of all the good things I can, and should, do for myself.

That French fry or glass of wine is nowhere near as rewarding as a healthy body.

12 comments:

You are so courageous and strong. And NO, you did not cause it, and both times you had lost weight and exercised, which are good things. I love that you don't believe in guilt trips. I don't either. The could of, should of, would of mentality is so damaging. We have now, so let's do the best we can with this.

Thank you Patrica I just loved what you wrote.Healing prayers for ongoing healthy happy life again post treatment. Personally I had 8 years ago the BRCA 1 & BRCA 2 gene testing myself, I don't carry these genes, but now you can have other gene tests within this panel, other breast cancer genes have been picked up, so have to decide if I should pay more money and have more gene tests, again will it help me??,while still having mammograms,ultrasounds checks. I just wanted to say well done on all your support to other women all over the World. I live in Sydney Australia. My own Mother was diagnosed at 68 yrs with Estrogen Neg breast cancer, triple negative, invasive ducal carcinoma, cancer spread to 4 lymph nodes, was reveled after lumpectomy, My Mother had no other spread that was detected via MRI at the time of her breast cancer diagnosis , she had 5 months of Chemotherapy, then radiation , finishing treatment, and with in 3 months was diagnosed with spread to femur, breast ulceration, did more chemo etc etc, death at 69yrs, 19 months from day of diagnosis. My Mother had never had even ONE drink of wine, alcohol in her life, no family history of breast cancer or ovarian cancer going back many generations, she was never tested for the BRCA 1 or 2 gene, so don't know if she carried the gene. My Mother was a vegetarian most of her entire life! My Mother was not fat, exercised, looked healthy, but of course was by her 60's maybe 6-7KG ( think that's 1 stone) heaver than when she was in her late 20's, as we age very hard to stay the same weight, even with exercise I know. My Mother had never had any operations, never took HRT ,never was sick, except at 13yrs of age she states. Can I give you some of my theory's as to why my own Mother may have developed breast cancer,yet living a healthy lifestyle. My Mother had very bad pneumonia at 13yrs of age and had a chest x-ray's in hospital, was in hospital for 4 weeks in those days, very sick, high radiation used for X-rays in 1949 I would think?, my Mother couldn't breastfeed both her 2 children very long, another protective help, my Mother only had a couple of mammograms in her life time.8 years before diagnosis of breast cancer, it was reveled by mammogram that she had calcification in her breasts that needed monitoring,radiologist suggested my Mother come back in 12 months time,as we know Calcification can turn cancerous, she was so hurt bruised by the mammogram, she never returned sadly, or told anyone, fast forward 8 years, my Mother finds a lump, which as I have written above was Estrogen negative etc. I am writing all this to encourage all to have tests, check ups . My own Doctor I have checks believes 2 yearly mammogram's plus breast ultrasound is enough, plus a Doctor yearly only check your breasts, plus yourself, not yearly mammograms, due to all the radiation over a life time, unless you can have MRI every year, which is not what Australia is doing yet for many.Just wanted to say Patrica I think you have done wonderful, worked hard at staying healthy. I was also told by a breast specialist that 1 glass of red wine per day is very safe, even protective, but again yes 1 standard glass, not a large glass that contains nearly 3 standard drinks, Red wine, not white wine, due to antioxidants and yes extra folic acid in diet,supplement if you do have a small amount of wine weekly. Fiona

Yep, one of those middle of the night questions: bad karma, too much booze, too much fat, too much stress, not enough antioxidants, poor choice of parents..

What am I doing to cut the risk of recurrence? Baby aspirin (preliminary studies quote amazingly high 50% reduction of risk)Vitamin D , lots of exercise, try to increase intake of fruits and vegetables. Have NOT eliminated alcohol.

Now I am mulling over repairing the damage of having half of a breast removed. To cut the excess off the 'good' breast is easy but to pump up the deformed breast into something cosmetic pleasing will be a challenge according to the surgeon.

Thank you for your blog. It has been a source of hope for me, recently diagnosed with triple negative breast cancer at the age of 68. I had a family history so I had the test for the BRCA gene and I do have the BRCA 2 mutation. Currently I had a lumpetomy and am having chemo. Instead of radiation i am going to have a double mastectomy after the chemo. I hope to incorporate your recommendations into my life. It is complicated by the fact that I also have ulcerative colitis and cannot eat a lot of leafy or hard to digest vegetables. Thank you again for writing about your experiences. I wish you a quick and successful recovery from your surgery. God bless you.

Pat, sorry to hear about your recent diagnosis, but am pleased you're continuing your blog. I bought a copy of your book not long after my wife was diagnosed October 2014 with both triple negative breast cancer and non-Hodgkin's lymphoma in the form of a presacral 3x3x3 cm mass. She has since completed four rounds of R-CHOP chemo every three weeks followed by 12 weeks of Taxol chemo and on August 11 this month had a lumpectomy with dissection of several lymph nodes. However, when I took her to see her oncologist yesterday, she gave us a copy of the post-surgical pathology report which found the breast tissue to be HER-2 positive and not triple negative. Needless to say, that took us by surprised. The pathology for the lymph nodes is not back yet, but I'm taking her to her breast surgery this afternoon to remove the drain from the lymph nodes and will question the surgeon about the HER2 diagnosis and ask if the pathology report for the lymph nodes is back yet. During my 35 years working for the Social Security Administration, I saw a lot of breast cancer reports, but don't recall ever seeing a case where triple negative turned into HER2. Perhaps you've heard of such a case, but I wonder know if we should have asked for second opinion on the initial pathology last October. My son and I talked about getting a second opinion, but never did. If the pathology on the lymph nodes also finds HER2 positive, I'll have to assume it's valid, but as we all know, pathology is not always 100% accurate; I do plan to read your book a second time although I have read through some of it a second and third time. You were kind to inscribe a personal message to my wife on the inside cover of the book and we keep the book in open sight so we don't lose track of it. Good luck on your new treatment. My wife's tumor was 7.5 cm when first diagnosed and the chemo shrunk it to 0.3 cm. Unfortunately, she's now looking at 4-6 weeks of radiation followed by 12 months of Herceptin infusion every 3 weeks. The oncologist had asked that the surgeon leave the port intact because of the non-Hodgkin's, but it now appears the port will be used for the Herceptin. We're at a loss to understand how triple negative breast cancer could evolve into HER2 positive. Another strange element of my wife's chemo was the fact it caused her blood pressure to go hypotensive this past May after being on 4 hypertensive drugs for two years and she has not had to take any hypertensive drugs since that time, but I do check her BP once a day. We expect she will eventually have to resume at least one of the BP drugs, 5 mg of Lisinopril being the first one to resume. Thanks again for your blog and best of luck for the future.

Jim and Sharon. I will send you an email, but my short suggestion here is to go back to the original biopsy and have them rerun the tests to see if the tumor was, indeed, TNBC at that time. Also to retest it now to make sure the Her-2-negative dx is also accurate. I agree this sounds like a bit too much alphabet soup. Essentially, I suggest second opinions on the pathology, at the very least. Hugs. Pat

Hi Pat, I am recently diagnosed with tnbc at age 70 !!! In 2009 I had stage 3 colon cancer, removed most of the colon and 12 chemos. Thought I had paid my dues with that, but here I am again. I had a mamo, ultrasound and biopsy in January 2015, they said it was fat necrosis (dead fat) and not cancer, said it could go away by itself or grow and I could have it removed. Well it grew, went in to see about surgery, they did another mamo, ultrasound and biopsy, said it was tnbc. I'm pretty upset. Was that first diagnosis wrong ??? or did cancer grow right next to the fat necrosis, cause it's in the same place. Did the fat necrosis go away or was it cancer all along. Surgeon said she won't know until they take it out. I get to have chemo first to shrink it (it is huge) then surgery (I want the whole breast off) then radiation. I read your book, it's such a help to me. Had ct scan, heart scan, bone scan, said it hadn't spread. I see my oncologist next Monday, hope to start chemo right after that. I'm gonna fight this, eating healthy, walking. I get down sometimes.

Seems there should be a one-cancer-per-person rule. So sorry you're taking this blasted journey again. Great that it did not spread. And great that you are focusing on taking care of yourself. We all get down sometimes—don't you think we'd be a little nuts if we didn't? It is a bit more difficult to be chipper after a second diagnosis, though. Good luck with treatment.And do glad the book helped. Sending many hugs.

I have long followed your blog, and I wanted to send a note to you that I'm praying for a healthy and speedy recovery. Also, I appreciate the reminders of what we should do. Instead of thinking that you contributed to this new primary, why not instead realize that you kept cancer away for a long time, probably because you did the majority of things right. I think the small lapses in your routine did not cause this, please don't blame yourself. You are an amazing lady and have provided so much information for all of us TNBC survivors. You will once again pick yourself up and survive this. There's no doubt in my mind. Much love to you, Patricia.

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Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery

Finally! A book about TNBC written by a woman who's been through it—Patricia Prijatel, founder and editor of this blog. If you like this blog, you'll love this book.

Patricia Prijatel

Founder of Positives About Negative and author of Surviving Triple Negative Breast Cancer

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From Symphony Sisterhood

Welcome

When I was diagnosed with hormone-receptor-negative breast cancer, I required a positive attitude of myself—I was not going to let a disease have the upper hand. I hope I can share some at that attitude with you while I offer what I have learned in my trek through this disease as a patient and medical writer.

It's a given that life ends in death. Cancer just makes you face that inevitability more directly than you might have before. To me, that means living fully right now.

Three Mountain Dogs, a children's book by Patricia Prijatel

Triple-negative breast cancer (TNBC) lacks hormone receptors for estrogen, progesterone, and Her2/neu. It affects about 20 percent of all those with breast cancer. This blog offers information and hope for those with TNBC and other forms of hormone-negative breast cancer.

Calm Spirit Note Cards

Blank greeting cards with the Calm Spirit image are available in packets of 6. They're ideal for sending a personal message of encouragement to anyone living with cancer. Boxes of six are available for $10.00 and can be ordered by contacting my friend Madlyn at madlyn.ferraro@ gmail com. Individual cards are $2.50 each.